Effects of Cepacia?

anonymous

New member
Hi all
I have read quite often on this forum that once a CFer has developed cepacia their health has really gone down hill - having recently cultured cepacia myself, this concerns me a LOT!! Can any of you with cepacia currently plse tell me firstly do you know what genomovar you have? and secondly, how did you notice a difference in your health? what changed, got worse, or what additional symptoms did you discover that weren't there prior to getting cepacia. Any help you could give me would be much appreciated. Also, is it possible to get rid of this bug, or is it pretty much a stayer once you culture it once or twice?
Cheers
Kat (37 with CF, NZ)
 

thelizardqueen

New member
As a person who doesn't have cepacia yet - I'm curious about these questions myself. Just so I know what to look for if and when I eventually do get it.
 

JennifersHope

New member
I don't have cepacia.. but I have two ppl that I love dearly that do.. both of them are effected differently.. One friend is sick with it... but has been pretty stable for a while with it as well..I think he has had it for 15 years...


My other friend was just dx with it over the summer... and he is quite sick with it... he went from being really healthy and active to being on bi pap in a matter of months.....

Both friends have the Gen 3 strain... so I guess you can't really tell...just depends... On know winace.. Allan had cepacia since he was quite small and he lived a long time with it.. I guess it depends... Same thing with MRSA. some ppl get real sick shortly after they culture it, others don't... I kinow it is a pain in the neck to wait it out and see what happends.. I cultured MRSA for the first time in Sept.

They are not able to irradicate cepacia at this time though their is a clinical study being done on an antihypertensive drug called amiloride.. which has been found to be help fight cepacia.. My one friend on it so far has not had any good results though..but we are praying our butts offs that it will soon help him...

My best advise is everyone is different.. I think DIane on here has been pretty healthy and has had cepacia for a while... Just go by what your body is telling you....

Good luck,

Jennifer.
 

anonymous

New member
I have cepacia also..there are only a few on this board i think who have it. I have genomovar III and started culturing it about the time I was 18, and I am 22 now. I didnt get sick from it immediately at all, in fact there was a mix up with the whole situation. I was admitted one time, and the attending came in and explained that I would be on such and such drug because of my cepacia, and I said WHAT! And they had no idea I hadn't known. But I wasnt really sick from it- it was just a normal cleanout. Then about a year later I was having another cleanout and all these doctors came in, sat down, and said - "I am sorry but we have to tell you that you cultured cepacia." I was like, "yah i know!!" This was all a huge mix up because I was switching doctors at the time, etc.

Basically I guess when you look at my health now, and my health when I was say, 16, it is definitely not as good, but not HORRIBLY worse. However, there was not a quick drastic decline in any way. What has changed is the amount of drugs i need on a cleanout (3-4). I geuss there was a slower decline, and some plateau-ing, but even this didnt happen immediately. From about age 18-20 I was the same as before the cepacia, so who knows what causes the decline. I have cultured psuedamonas since I was 7, and still culture it. Hardly anyone has ever erradicated cepacia. It is entirely possible to level out at a certain health level with cepacia, but it sucks. There is a new study in the works of tobra/amiloride treatement for cepacia, and in a small study 3/4 patients erradicated thier cepacia with it. They are working on larger studies.

Caitlin
 

anonymous

New member
Hi I'm Christian, Fairly new to the Forum,
I have cepacia. I got it when I was about 15. I am 23 now. I would say that mostly I feel it in my energy levels. And also when I get a cold, or exacerbation it can be much harder to get rid of. What the other person said, I totally agree with, about the "plateauing."
I experienced that. I just couldn't get my number over 85. Then I got a new doctor, with a very, yes, difficult program. Hitting the gym 5 times a week, hand chest PT, forced coughing exercises. And I got it up to 98! So if you experience that, you can break the plateau, with HARD work. But the feeling of your breathing is so worth it.
Don't be scared of the cepacia. It does suck, but it just means you have more work to do, and more research. Let me know anytime if you want more tips, or my email.
Christian<img src="i/expressions/puppy_eyes.gif" border="0">
 

Diane

New member
My experience with cepacia has been one of ups and downs. I have genomovar III. I went in for a sinus surgery ( first time in the hospital) when i was 31. I had pfts of upper 90's and had always been healthy. I noticed after the surgery i never stopped feeling like crap and kept thinking it was a reaction to the anestesia, which is what i was told can happen for a while. I started getting low grade fevers every day about 1:00 pm that were about 99.3 or so but my body would ache. I started to develop a cough that never seemed to want to go away. (before that i barely coughed) then the exhaustion hit. I had the unexplainable tiredness that was rentless no matter how much sleep i got.Taking a shower was so much of a difficult task. I kept telling my doctor something is wrong, but they would change me to another oral antibiotic and id feel slightly better for about 5 or 6 days then the same symptoms would be right back. Finally about a year after this all started my doctor looked in my chart and saw from my last sputum sample i had cultured cepacia. I could see they were as worried as i was, which scared me even more. I went into the hospital for iv's ( my first time for those) and i felt a bit better afterwards, and then it was onto a mixture of oral antibiotics. What i notice most that cepacia has done to me is that i get pneumonia maybe once or teice a year where i never did before. The problem with the pneumonia is that i get so out of breath that even walking around from room to room can get me out of breath. Those types of pneumonia scare me silly. It isnt always like that, but it sometimes is. I run fevers when im sick also and even sometimes when i am feeling great. My fev1 has gone from high 90's to 46% since i got cepacia, and my fvc has gone from 100% to 68%. Although i dont like any decline, im glad it isnt worse. I intend to do some work to get those numbers up and i know i can. I started using glutathione ( orally)about 3 years ago and noticed a HUGE difference in my energy levels. I have the energy i used to have pre-cepacia which has allowed me to remain active which is so vital. Before i used the glutathione i was always tired, not horribly tired like before i was diagnosed with cepacia, but tired to where i wanted to always be lazy and veg out on the couch. I am NOT like that at all now, i finally recaptured my energy level i used to have<img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"> If you need any more info i'm always here.....................
 

Faust

New member
It used to be a death sentence a long time ago, almost always destroying lung function and killing very quickly. Now my doc said the newer drugs actually do some good, and it's not a cut and dry immediate death sentence like it used to be. Personally If I got cepacia, i'd be even more vigilent in the use of essential oils, and their delivery into my lung areas, just to make sure I didn't fall into too big a hole I couldnt get out of.
 

anonymous

New member
It really all depends on whether or not your cepacia is sensitive to medication combinations or not, not necessarily just the fact that you have cepacia. If you have a great deal of medicines that show sensitivity, then the cepacia can be similar to pseudamonas or anything else- i.e. the drugs can treat it. The problem is with resistance to drugs. Also, like Diane said, sometimes there are side effects to the bug itself, like exhaustion, fevers, etc.


Caitlin
 

anonymous

New member
Thankyou you've all been very helpful. I am unsure how long I've had cepacia as I only ever did my very first sputum sample about 6 months ago, at which time i was culturing psuedomonas, staph, haemophilius influenzae and cepacia (genomovar 2). I now only seem to culture the cepacia due to a natural therapy I use - the staph and pseudo have only come back once (when i stopped my natural therapy for a few weeks) and so far nothing else has appeared.......thankfully!! In general i do seem to be a bit lacking in energy sometimes and my appetite isn't what it used to be - but on the plus side I have put on 8 kilograms since i came out of hospital and my cepacia is supposedly the 'not so bad' one and is currently sensitive to all antibiotics except for aminoglycisides - so fingers crossed it won't be too much of an issue for me in the near future anyway. I like the sound of this amiloride/tobi medication, although my cepacia is resistant to tobi, so not sure if it will work properly on my particular cepacia or not - it may do, as from what i've read it would appear that all cepacia's are resistant to tobi, but in synergy with other antibiotics it may work ok.
Thanks again to everybody who responded, i really appreciate the info and sensible advice.
Kat (37 with CF, NZ)
 

anonymous

New member
I must say that the fact that you have genomovar II is very good. It tends to really be genomovar III that is the culprit. Obviously nothing is good, but I would much rather have II than III, and it is my understanding that people have been able to eradicate other genomovars!

Caitlin
 

anonymous

New member
Kat,
What natural therapies are you using? Were you just recently diagnosed with CF? Sorry if this info has been posted under another tread.
 

anonymous

New member
hi again, glad to hear that maybe genomovar 2 could be eradicated from my system one day.........possibly........positive thinking eh!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
I was diagnosed when i was 19, although i'd had a nasty cough a lot since about age 13 or so (coincidentally when i stopped being extremely sporty and athletic!! prior to that it had not been an issue), but my obvious issue was malabsorption of food - basically i looked like an ethiopian.........all skin and bones except for a rather round tummy (VERY attractive!! haha). But once diagnosed i was in rebel mode and said cheers, give me those enzymes and i'll see ya round. Never went back, just kept taking enzymes and on the odd occasion i felt my cough was worse than usual I'd get oral antibotics from the doctor, maybe on average, once a year. I always coughed up a bit of gunk though, but not cups of the stuff like they'd led me to expect I would. Then in May this year I got way sicker than usual and couldn't seem to shake it, ended up in hospital with a pulse rate of about 140......hence my first sputum culture and my introduction to club intravenous. Once coming off my home IV's i felt better than I had in years and put on quite a bit of weight. I then decided constant toxic chemicals were not something i wanted to expose myself to on any sort of regular basis, essential times only, so set about researching natural therapy's and except for the two weeks I stopped taking it, I haven't been sick again since and have maintained my weight. I also stopped smoking when I got sick in May (i know i know...........shoot me later!!) and my cough is way better and i hardly bring up anything at all now. To be honest i don't really even do my physio regularly anymore - i was doing it twice a day when i first came out of hospital, now I just do it if I feel I need to.

The therapy i found is actually used for chronic bronchitis and is as follows:

Two times a day, through a facial sauna, I half fill the water repository with sterile water and add to it:

1-2 drops of Thyme Oil
1-2 drops of Clove Oil
1-2 drops of Cinnamon Oil
1-2 drops of Oil of Oregano (this is a new addition thanks to Sean Davis, but the other three worked fine on their own)

I then turn the sauna on steam and allow the mixture to boil and start giving off a good amount of steam. I then place my head over the steaming mixture, making sure none escapes out the sides and I breathe in the steam slowly and deeply for about 2-3 minutes, holding it in my lungs for a few seconds each time (some breaths through my mouth, some through my nose). At first it might be harsh, but in time it's easier, so if you're going to try it, do it gradually, a few breaths the first time is fine, even one if that's all you can take, work up to as much as you can handle and if it's too strong all together, only add 1 drop of each oil and add more sterile water until you can handle it better.

After that I take one teaspoon of colloidal silver and if I feel like it, i do my physio. I find the steam mixture apart from clearing my nasal passages and killing 75-95% of pseudomonas and staph bacteria, it also tends to liquify any mucous I have in my lungs allowing me to cough it up easier. The colloidal silver is also a wicked anti-bacterial and immune booster, just don't eve take more than 3 teaspoons of the stuff a day - you might end up turning silver!!!

Since doing this therapy, the only time i've cultured staph and pseudomonas again, was when I deliberately stopped doing this inhalation for 2-3 weeks as I wanted proof it was working............i ended up back on IV's, whereas all my cultures when I was using it, only grew cepacia. That's understandable, as none of these herbs ever claimed to kill cepacia bacteria, only staph, pseudos, virus's and yeasts. Apart from Pulmicort in the morning (if I remember) and the very occasional blast on my combivent, I don't take any other medications, just enzymes. I'm hoping that by not exposing myself to the strong chemicals such as Tobi very often, when I do need them, they'll really work well and my bugs won't build up too much resistance to them.

I'm more than happy to email the original document/recipe out to anybody who wants it - i purchased it off the internet - it talks all about the testing they did, the results, warns about potential allergies etc etc.<img src="i/expressions/devil.gif" border="0">
 

Alyssa

New member
I have wondered about the use of those facial sauna things -- these are the small units that just produce steam that you breath in right? -- just purchased at any local drug store for like $20 or less?

I wondered if since pseudomonas is a "water" bug that I might be putting my daughter at more risk for getting pseudomonas by using a machine like that (containing water and inhaling steam)???

Does that make any sense? Has anyone ever been told by a cf doc that inhaling steam (with or without anything added to it) was recommended for someone with cf?
 

anonymous

New member
Hi Alyssa, yes that sounds like the type of facial sauna I use. Mine cost about $40 NZ, which would equate to about $20USD. I too wondered about the potential to actually get bugs from this rather than have it clear them up, however using sterile water and the fact that you let it boil first, I think would kill any bugs that may have been in the water or the sauna cup itself. I have mentioned to my CF nurse over the phone what I am doing and she didn't seem concerned in the least, in fact she's looking forward to me telling her more about it. But, as with anything new it wouldn't hurt to run it past your own doctor and see what he/she thinks. Also, I myself have never had hemoptysis (sp??) and am not sure if this would be a good idea for anybody that does get this.........it could potentially aggravate this problem...not sure. But if your daughter has not yet cultured pseudomonas, please do check with your cf experts first, i would hate for anybody to come off worse thanks to my input. I don't mind mucking about with experimental therapies on myself, it's my body and i'll only have myself to blame if i stuff up.........but i'm no expert whereas (in most cases anyway) the doctors are. Also, I would never even consider trying to self medicate a major infection with these herbs. Antibiotics save lives and most definitely have their place and for CFers sometimes they are the only reason we're still alive. I am just a bit wary of what constant strong antibiotic use could potentially do to the rest of our body, so am keen to find an alternative for in between exacerbations and to hopefully put more healthy time in between times of ill health. Especially when i see how many CFers have other complaints such as diabetes, osteoporisis, joint pain, sinus problems, night sweats etc etc. I never have any of these problems and I'm 37 years old with double Delta508 - the only difference i can see between myself and many others with CF is that i have never really treated mine.........i've pretty much thumbed my nose at my CF and led a very full and somewhat wild lifestyle, which doesn't mean it won't all catch up with me one day............but i really do wonder what a lifetime of constant drug taking is actually doing to CFers bodies that they may not be aware of. Dunno, just my opinion anyway.

Kat 37 with CF (NZ)
 

Faust

New member
People who have been around for a while and kept their eyes open, should heed Kat's advice. If you can find something that can naturally keep your bugs low without fear of resistance (certain essential oils), use it now while you still have some semblance of health. Don't just sit around and wait to get sick and then be pumped full of antibiotics, and then rinse and repeat over and over till you have multi resistant organisms, and more than likely fungal colonization on top of that due to the massive antibiotics (happened to me last hospital visit and scared me to death). I am going out tomorrow to get a facial sauna, and i have my red thyme pure oil coming to me very soon that I got online. I knew cinnamon and your other oil had beneficial biocidal properties, but I wasn't going to neb them like I do the oil of oregano. I also ordered the water soluble oil of oregano to use only for my albuterol nebs, and ill use the regular oreganol p73 for the sauna inhalations.


Quick question though Kat. I did a ton of research into both Red and White thyme oil. White thyme oil is just red thyme oil (not actually red, more brownish, but they call it that), and the only thing I could find with Thymus Vulgare (scientific name for either of those), is that the white oil is just double distilled, and the red is considered more strong, and basically it's plain form. My take was that I didn't want to possibly "water it down" via double distillation, and i've learned along time ago when dealing with most oils, any oil that has color to it vs a similar oil that is clear/white, the colored oil will always be more potent.


So i'm just wondering what your feelings are on red vs white thyme oil, and which one you use. I'm far from "set in my ways" with regards to what oils to use, aside from the golden truth that is oregano oil, so if you want to email me your recipe and your findings (the research dealing with your oil inhalation combination), please feel free to email me at Faust@tampabay.rr.com or Faust227@yahoo.com (second one would probably be best, the first one is massive spam).

Thanks.
 

Faust

New member
BTW while looking around for a good facial sauna I came across these on target.com


http://www.target.com/gp/search.html/ref=sr_bx_1/601-1714783-0516958?field-keywords=facial&url=index%3Dtarget&x=0&y=0


Here is the one I bought, it actually has an inhaler attachment for the exact reason why i'm buying one. Kick teh booty!


http://www.target.com/gp/detail.html/sr=2-2/qid=1136412192/ref=sr_2_2/601-1714783-0516958?%5Fencoding=UTF8&asin=B00009KGGG
 
Top